. . . a funny old life with multiple sclerosis

Tag Archives: DWP

I quote, from a DWP representative who visited me for an hour, with me being the last one on her list of six for that day:

‘she … raised both arms up to her head running her fingers through her hair.’

That is an actual ‘observation’ of what it is like to live with MS.

Funnily enough, all her comments create an image of a meeting I don’t actually recall taking part in. Apparently I was ‘dressed appropriately for the climate and was well-kempt.’

If you consider a worn and old t-shirt and jogging bottoms (minus a bra) to be well-kempt, I would seriously worry. Likewise my hair, greasy and lank, which I hide under a woolly hat most days.

My ‘memory is good’.

Yeah, I wish.

I ‘handled my ID well’ – which is strange as my mother did that for me.

My ‘speech was normal and I showed no signs of distress’. So she obviously forgot when I asked her to give me a break and stop asking me question after question after question, with the sole aim of catching me out.

Apparently I ‘visit family often’. My mother lives two streets away, my sister a few miles. I haven’t seen my sister in months and my mother visits me by taxi.

I could go on but I won’t bore you with the endless lies.

One last thing, I was ‘chatty and engaged’, with ‘full eye contact’. Which is strange as she (the Assessor) never looked directly at me once. She was so disengaged she might as well have spoken to my back wall.

I am entering the sixth month of DLA to PIP assessment.

Six months.

And according to this person, I should go through this again every three years.

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So, when you receive an indefinite award for Disability Living Allowance, you tend to believe them, especially as MS is incurable and degenerative.

As it was for me back in 2012. The money, as stated, went towards the extra costs a disability can bring. And life went on.

We still had a lot less money than before, as my working hours had substantially reduced, but the DLA provided a cushion of sorts.

Until October last year when The Letter arrived. It was entitled, ‘Your Disability Living Allowance is ending’. So it wasn’t ‘indefinite’ after all – ‘this affects you even if your DLA has no end date’.

Right.

Imagine the uproar if people receiving the basic State Pension (by far the biggest benefit paid out – for costs associated with being older and probably not working) were suddenly reassessed:

DWP: You’ve been claiming your pension for years. Indefinitely, we say in Government Speak. Subject to change, of course.

Pensioner: Well, yeah?

DWP: Ah, you see, not all pensioners are the same. Some need more support but most need far less. So we need you to fill out a massive form, gather evidence and put yourself through a degrading assessment where we will decide on the spot whether you are deserving or not.

Pensioner: Okaaaaay?

DWP: And that automatic Winter Fuel Payment you get? You know, the one you have if you were born before 1953? Even if you’re a millionaire? Don’t worry, you get to keep that. Not worth the backlash. It’s only £550 million a year. We normally target disabled people to get some money back in to the coffers. Makes for the most sensational headlines.

Everyone under 65 receiving DLA or PIP for MS will have MS for the rest of their lives. Yet, they are all reassessed. One-third will lose their benefit, according to latest figures. They’ve taken £6 million off us people with MS so far, and counting.

Everyone receiving the State Pension will receive the State Pension for the rest of their lives, no assessment needed. Neither are people on DLA over the age of 65 reassessed. It’s an automatic roll-over on to PIP.

I have absolutely nothing against pensioners, I’m merely using their particular demographic to highlight the gross injustices within the entire DWP system. Here’s the latest figures:

£171 billion spent on all benefits, of which;

£90 billion spent on the basic State Pension

£36.7 billion spent on disability benefits

£2-£3 billion spent on Winter Fuel allowance for all pensioners living in the UK

£550 million spent on free TV licenses for people over 75

The whole system seems somewhat arbitrary? The assumption is, when you reach pensionable age, you are due benefits, regardless of any other factors.

As for working, which most of us with disabilities try to do as long as possible, 46.5% of us still work. 10% of people with the basic State Pension still work. In fact, we are pushed in to work, no matter what our disabilities. Figures show at least 90 disabled people a month are dying after being found fit to work. Again, imagine the outrage if the demographic group was different?

My face-to-face PIP assessment took place yesterday. I had, after much consultation, filled in the huge form, adding as much information as I possibly could, a brutal and inhumane exercise in its own right. Apparently the one hour the assessor spent with me will count towards the Final Decision the DWP will make – to continue disability payment or not.

We’re told this kind of assessment forms but a small part of the DWP Final Decision. I’ve heard otherwise and I have no idea whether I ‘scored’ enough points (yep, that’s what they do, they score you).

The weird thing is, I am fighting to remain poor, to retain the same benefit between DLA and PIP. Mine is not a new claim. If it wasn’t so tragic, with the possible outcome being so life-altering, I would laugh.

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These Personal Independent Payment (PIP) forms are the ever present Grinch, creeping around my house sucking the very life out of everything that is positive and festive.

However, you guys are angels in disguise – thanks to all your incredible advice, I have now come up with a plan:

I ‘borrowed’ a pad of A3 paper from The Boss and I’ve got one sheet per question. First, I wrote down every MS symptom I experience, relating to each question, then went back over it and jotted down every single example of difficulty I could think of, relating to each symptom, for each question. It’s mind-bendingly complex and it’s taken me hours and hours. Whole days, interspersed with sleep and despair.

Finally (and I haven’t managed it yet), I will take each question in turn and write out a full answer using all my bullet points. After that, I will find a kindly peep (hello, Boss!) who will transfer my scribbled, unintelligible answers on to the form.

I met up with a friend last week who simplified the whole process by saying, ‘imagine a friend, who’s the same age as you. What can she do that you can’t?’ Well, that floored me. As I left, he also said, ‘no one should go through this process alone’ and it was all I could do not to dissolve into tears there and then.

He pointed out just how important it is that – especially as MS can fluctuate for some of us – the words from the DWP to keep in mind are that you will be assessed on what you can do;

safely

reliably

repeatedly

to an acceptable standard

in a reasonable time period

So as your symptoms fluctuate, so does the time/pain/stress it takes you to complete certain daily tasks. Perhaps one day you just about get by with a lot of give and take and the next day you’re on the sofa. Like me.

You’ll find you repeat yourself over and over in each question and that’s ok. Your MS has given you a set of symptoms and they give you a set of problems and very often these are the same symptoms and the same problems.

What these forms don’t prepare you for is the absolute horror of trawling through the years, realising how much you have ‘adapted’ to MS and incorporated it into your life. Because you have to. When I think about it – and the friend I can compare myself to – it’s just not normal to fall asleep in work, be too tired to cook six days out of seven, to not leave the house unless I’m with someone.

I am living a twilight existence and thanks to the PIP forms, this has been exposed in all it’s grotesque glory.

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I still have a copy of my DLA forms from 2011, when MS shot it’s first devastating blast into my life.

I still remember the soul-destroying process of detailing every single thing I couldn’t then do.

I was 37.

I still have the new PIP forms in front of me.

I just can’t do it.

Yet here we go again, despite a ‘lifetime award’ from the DLA. I have to go through the whole soul-destroying process again.

What can you not do?

Six years on, let me see.

First off, MS is still incurable and degenerative. So it’s unlikely to have been cured in the interim.

Yup, I still have MS!

Can I cook? Can I go to the toilet on my own? Do I have accidents?

Intrusive, invasive and completely unnecessary.

I have been fortunate enough to have had Alemtuzumab treatment three times, once more than the usual, given the severity of my MS.

Does this make me really ill? Or really not ill? I didn’t choose to go through an invasive chemotherapy-involved treatment to see how it goes. It was a serious decision. And has it’s fair share of side effects.

So I have nerve pain? Numbness? I trip up when I walk? I have brain-fog?

Serious enough for the DWP?

Probably not.

DWP forms are designed to turn your known world on its head – so you think you have mastered your illness? Hah! Have you incorporated it into your work-life? Oh, really?

The Boss has picked me up for work every morning since early this year, when my symptoms made it too difficult to drive.

Almost a year on, it’s become the norm, which takes a huge amount of pressure off me, yet another adaptation that has slid into my life almost unnoticed.

After a bit of training, he makes sure there’s a fresh coffee in my little cup-holder, and if I’m lucky, a croissant or bacon sarnie.

Anyway, yesterday the job ran over and The Boss arranged a taxi to get me home which I fell into gratefully.

Until the conversation, which went something like this:

‘Been busy today?’

‘Yeah, lots of calls, but most of them for so-called disabled people, I drive them to their assessments? What a joke. Malingerers, the lot of ’em.’

‘Well, some of us do work? Like me?’

‘Yeah, but most of them, they look … normal? Nothing wrong with ’em. And there’s me, working 60-70 hours a week, slogging my guts out, to fund them? I mean, there’s something seriously wrong with the system?’

‘Yeah, but I work?’

‘Not the point, is it? Honestly, you should see them, prancing around, then well upset when they don’t get their benefits. Benefits? Free-loaders, the lot of ’em. And there’s me …’

This went on for fourteen miles. Nothing I said would convince him to see the other side of the debate. He’d read his newspapers and was ‘well-informed’.

It wasn’t only disabled people; students were another pet-hate; ‘four of ’em in my taxi – a quid each to go to town?? I mean, they gotta get used to real life, but they’re living it up like kings at university.’

His views to one side, this was a chilling reminder of the wider view of what people like us have to put up with, especially in light of being reassessed for PIP. Not only do we encounter the DWP rock-face, we also face a monumental societal challenge.

You would think, with such a serious illness as MS, we were somehow ‘protected’ from this bile. A verifiable, quantifiable, certifiable illness? Not a chance. We were all one and the same.

When I got back home, I grabbed the cat and went straight to bed. It’s the best place to be right now and I seem to be going earlier and earlier. It’s the only place I can be at peace.

I’ve been knocked down many times – most significantly in 2011 when MS blasted onto the scene, then the diagnosis in 2012 and my subsequent sacking. You get knocked down. You stand up. You take another blow. Partner’s left? Blam. Income dropped? Blam. You get knocked down. You stagger up again.

How many times can you get knocked down? Just when I think I have created a world that works for me, it’s destroyed. And this happens over and over again.

MS is bad enough, but the DWP should really have their own disease/illness classification – ‘DWPitis’ – : symptoms include:

Hopelessness

Fear of the future

Anxiety/panic attacks

Destitution

Increase in existing illness symptoms

All of the above x 10

And just when I think things can’t get any worse, The Teenager texted me yesterday to inform me he’s applied to be on ‘Love Island’…